Purple Day, also known as Epilepsy Awareness Day, was established in 2008 by Cassidy Megan. At the time, she was nine years old, and she was determined to connect people with epilepsy to each other and launch a global movement to increase epilepsy awareness. Seventeen years later, Purple Day is an international phenomenon. Every March 26th, people around the world wear purple and host events to increase epilepsy awareness. In addition to donning purple clothes today, I am celebrating Purple Day by showcasing two recent stories about elected officials with epilepsy who spoke publicly about their condition.
Twenty-eight-year-old British Member of Parliament (MP), Rosie Wrighting made headlines last summer, as the first woman elected from Kettering, England and the youngest woman elected to Parliament. Last week, the U.K. Epilepsy Society ran a story about Ms. Wrighting’s journey with epilepsy: She had tonic clonic (aka grand mal) seizures as a teenager but wasn’t diagnosed until her early 20’s. Her seizures have been under control for some time, so most of her constituents and fellow MP’s don’t know she has epilepsy. In the Epilepsy Society story, Ms. Wrighting speaks about the importance of raising epilepsy awareness and breaking stigmas: “I think one of the things that people don’t realize is that epilepsy is not just about the actual seizure, it is about worrying that one might happen and how that worry can affect your day-to-day life…. It is so important that we break down the stigma around invisible conditions and I hope that talking about epilepsy will help achieve this.
As someone with epilepsy who had uncontrollable seizures for decades, I can relate to Ms. Wrighting’s desire to elevate epilepsy awareness and clarify the challenges of invisible disabilities. I wrote my memoir, Seizing Control with those goals in mind. I suspect Ms. Wrighting feels a similar compulsion to pay it forward, or speak up now that the seizures are under control. I always appreciate it when somebody in the public sphere willingly uses their position to do this. While I recognize Ms. Wrighting’s courage, it’s worth noting that like me, she is lucky to have the choice about whether to share information about her epilepsy.
That was not the case for Congressman Larson of Connecticut, who had a focal impaired awareness seizure (aka a complex partial), which interrupted his speech on the House floor last month. Forced to disclose information about his condition, Mr. Larson’s office issued this statement the next day: “He suffered a complex partial seizure that caused him to freeze and abruptly stop speaking while delivering a floor speech.” Following the February 10th speech, Mr. Larson saw a doctor who referred him for further evaluation. Later, the Congressman said he had a heart valve replacement years ago due to a condition he was born with, which can cause subsequent neurological complications.
I watched a video of Congressman Larson on the House floor. I noticed his tongue pushing against the inside of his cheeks, his halting stilted words, as he looked at his notes and struggled to complete his thoughts about social security benefits. Then the moderator noted that his floor time was up. The video evoked my pre-surgery days, when I had focal impaired awareness seizures several times a month. That involuntary movement in his mouth, reminiscent of the lip smacking I experienced. And losing awareness and coherence while speaking publicly. I’d been there too–a scary, distressing place.
Congressman Larson publicly thanked the supporters who reached out with well wishes after this incident, but there were also some callous virtual responses at the bottom of the news story. Mr. Larson is 76, so many of them focused on his age, and the need for term/age limits, a topic for a very different post. Multiple people questioned Mr. Larson’s disclosure about having a seizure, which I found troubling. They speculated that maybe it was something else. “I think they meant mini stroke. Seizures usually involve convulsing,” one commenter wrote. “Heart valve issues and seizures don’t go together but heart valves and strokes do. Just say it! Be honest!” said another.
The comments are proof of why Purple Day and epilepsy education are critical. I want to find the people who made them and explain: Seizures sometimes involve convulsing but often do not. Seizures present differently, depending on what part of the brain is impacted, and the individual. Some seizures lead to convulsions where a person falls, others are as mild as staring off into space. Of course, the comments were made anonymously, so I can’t share this explanation.
For now, I’m happy to celebrate Purple Day and be grateful that there are courageous Epilepsy Warriors like Rosie Wrighting doing their part to increase epilepsy awareness.
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